Monday, September 26, 2011

Waiting on the test results

The nurse from the neurologist's office called me Thursday and said that half of the metabolic testing was in and that the doctor was back in town on Friday and hopefully could read the results and call me, but if not would call me Monday after she read them.  Still waiting on that call.  He could potentially have some life altering disease and they have the results and just haven't gotten around to reading them. AH!!! This is torture.  Deciding to pray instead of OCDing about it.  lol.

There are only a few new developments with Jacob.  He still is not answering to his name at all.  He is eating some more textures and making better eye contact, though.  He seems to be trying to play with people more and has developed quite the temper.  He also seems to be stimming a lot more.

Stimming is so strange to me.  Its hard to get used to seeing Jacob flapping or scratching his hands on everything, arching his back, pushing his head against things, biting me when he is excited or anxious, rolling his eyes into the back of his head and, most recently, standing on his head.  He does it all day long.  ECI says that he is doing it either because he likes the sensation of being upside down or because he can put a lot of pressure on his head that way.  The sensation helps him to organize himself.  The therapist suggest I find a hat or beanie that is really tight and see if that helps.  Therapists, parents, and doctors have mixed feelings about stimming.  Its publicly awkward, they need to do it to relax, yet if they do it too much they aren't learning anything and in classroom settings it can be very distracting to other children.  So how do you decide how much is too much and what to do to help them feel better? I noticed a child that was autistic in a classroom setting a while back.  He was having a hard time.  Its so disheartening.  He could't focus or follow directions, his classmates couldn't stop staring, and the teachers didn't have the resources to help him.  Do you tell the parents that their kids are too disruptive to participate?  Do you let the teachers get stressed out every week and keep the kids in the class?  My heart aches about it.  In fact, I haven't been able to stop thinking about it.  I think about my Jakey and all the other kids with autism and the difficulties they face and the hardships their parents go through trying to get them involved in community activities.  Autism effects 1 in 110 kids.  That is a huge number.  I wonder why there aren't more resources for these kids.  I have decided to pray specifically for areas of support within the local churches.  Two of the therapists that my son sees told me that 95% of their clients with special needs children do not attend church because churches do not offer classes for special needs kids.  Parents of kids with diabetes, hemophilia, mental retardation, autism, physical disabilities, etc need special childcare workers to watch their kids.  These parents need to have a church family, being loved on, and need to be hearing the Word.  These parents need support and the freedom to worship where they can be fully attentive and not fearing for their child's safety.  I know that every church wants to offer these services, but may not have the ability or funding or resources.  I am going to try and help where I can within our childhood ministries.  Won't you ask your preacher or childcare director to see if anything can be done to accommodate special needs families?  I asked the director of childhood ministries in our church about it and now she is trying to implement a coaching program.  This is a volunteer who can follow a child into their class and care for them as needed.  While this is great for kids with mild disabilities, its not enough for others.  Hopefully one day we can even have a classroom to accommodate the more severe special needs children.  What an awesome thing that would be to offer to local families.  If you know how to work with special needs kids I encourage you to volunteer at your church.  Imagine the life change you could make in the lives of those families for just an hour and half of service.  Our Jacob doesn't need this kind of care yet, I don't know if he ever will, but I am so thankful that there may be something in place if he does. 

We sold our house! Not only did we sell it, but we got full asking price.  That rarely happens.  We are just so amazed.  God has been so awesome in blessing us through all of this.  This whole autism situation has been so humbling to my husband and I.  First of all, Jacob's therapy costs much more than a house note so we had to put our house for sale and sell basically anything of value that we owned to pay for doctors bills and therapy.  We are totally OK with that, don't get me wrong.  God provided this house and all our stuff so if we can't have it anymore that's OK too.  Cret has a great job, so we aren't going hungry or anything, we just can't afford two house notes (house + therapy).   It is humbling though.  We are grown ups moving in with my mom.  Of course we want our own place with privacy.  Luckily, my parents are so excited and we have a lot to offer them help wise so I think it will be a great thing for everyone.  Most importantly we can get Jacob the help he needs until he doesn't need it anymore or until something else comes up as a way to provide help. 

By the way, our team is still accepting donations for the Autism Speaks Walk on October 22.  All of the money donated goes to autism speaks to fund research and help families in need.  The webisite you go to in order to donate in Jacob's name is We are very close to our $1,000 goal.  A huge thanks to all that attended my scentsy fundraiser in person or online.  That got us so close to meeting the goal!

I have to add a big enormous thank you.  We have recieved so much support in so many unexpected ways and we are beyond thankful and just in awe of how God has shown us His love through you all.  I don't really know what to say other than thank you.  All of the help and support and love has brought us so much joy and happiness and encouragement. 

This process is still tremendously difficult for me, I still go through days where I feel so alone and so helpless, but I know that the Lord is changing me so much.  I would have never thought twice about kids with special needs before.  In fact, it was hard for me to see past the day to day struggles of our family all together, much less any greater need.  True, I still let the difficulties of our situation get me down from time to time, but I'm much better at seeing God's hand at work now and just praying and letting it go.  Jacob is so wonderful and such a blessing.  I love him so much.  I just sit back and watch my children in amazement and filled with joy.  Jacob is a happy baby.  Jordan and Tyler are so happy. Autism isn't going to keep us down.  Finances aren't going to keep us down.  We trust in you, Lord. 


  1. As always thinking and praying for you guys. Everytime I read your blog I totally get it. Even though our boys have different disabilities we face the same challenges. I love the positive spin you put on everything and how you put it in the hands of God. Thanks for encouraging people to offer things for children with special needs in churches, what an important prayer.

  2. What an amazing mother you are and woman of God. I am so encouraged by your strength and your continual trust in the Lord Jesus! I pray for an overabundance of patience, peace, contentment, encouragement, support, money (it always helps. :) and space for your family to grow. Love you!